Forgive yourself as a caregiver, and relieve anger

In a book I highly recommend, "Ten Thousand Joys & Ten Thousand Sorrows", by Olivia Ames Hoblitzelle, she writes, "The strain of helping Hob (my husband) with his disease kept stretching me to the breaking point. My frustration and anger concealed the grief that lay at deeper levels ... The ravages of this illness spark powerful feelings in everyone ... We need to experience our humanness, including all the so-called dark emotions like anger and fear, because they are natural given the situation. It's natural to think you're losing it at times."

As stated in my last posting, anger is a real, normal and expected emotion in caregivers. In reading your comments, there's a prevailing theme — anger is triggered in caregivers when there is lack of validation and support from family members. As a result, anger is further exasperated by not having time for you.

Mark and so many of you wrote that you must get away and have some breaks — the right advice for sure, but easier said than done. Gisele said it helps to simply "put a voice to the frustration."

To find some relief, it's essential to first distinguish between what is, and what isn't, within your power to change. Often anger bubbles when we try to change an uncontrollable circumstance. The easiest way to find some calm may be to stop trying so hard to make things different.

When we resist, blame, or reject, we stay trapped in our anger. I don't mean that you can't actively work to make things better by asking for the help of family members. I simply mean that you make peace with the way things are today. Choosing to operate from a place of acceptance is a way to keep your anger in check and is a form of self-care.

A second consideration in relieving anger is to believe that there's something you can control. You can control your thoughts and ultimately how you respond. Each of us can learn to modify our thoughts. How we think about a situation greatly influences how we react and how much excess stress and anger we carry. As caregivers, our thoughts are often not unhelpful.

For example, have you found yourself taking responsibility or blaming yourself for a negative occurrence that's beyond your control? Or perhaps you're stewing about a situation that hasn't happened, but your mind is already anticipating the outcome. Too often it's our thinking (not the actual situation) that causes anger and prevents us from looking at things objectively. This ultimately limits our ability to find a better way to deal with it.

Kathryn wrote that she's able to ask for help from a family member to care for her brother with Alzheimer's so she can get a break. However, she wrote, "Then I get ANGRY at myself because I just sit on my couch and enjoy having my house to myself — I am not being productive."

This is a great example of how our thoughts about what we think we "should" do are in conflict with what we want to do. You end up feeling angry, guilty, or depressed. Yet, we can modify our thoughts (with practice) by thinking instead, "I need time to do nothing. It's OK for me to take a break from caregiving and just sit. The laundry and chores will wait. I am being productive right now in my own self-care."

The booklet titled "Pressure Points — Alzheimer's and Anger" from the Duke Family Support Program offers some questions to ask yourself that can assist in modifying your thoughts, relieving your stress and ultimately seeing possible solutions more clearly. Ask yourself these questions when you start to feel overwhelmed or angry:

What am I really angry at?

Do I really need to be concerned with, think about, or worry about this?

What are the consequences if I ignore this?

Is this something that must be done now?

Why am I doing this? Is this someone else's expectation?

Can I settle for a "good-enough-for-now solution"?

Remember, you're entitled to feel angry. Forgive yourself when things go wrong, and believe what you are doing is good enough for now.

"You will not be punished for your anger, you will be punished by your anger" — Buddha

56 Comments Posted

Last night I cried myself to sleep. Yes, I was overtired. My grandkids(4and 6) had been here for 4 days with their parents but I had a sitter for my husband one day and the other days, he came with us. I was exhausted! But the last straw was after they were gone I found that he had gone to the bathroon and got feces all over himself and his clothes and a chunk was in the sink. I just lost it. If I don't go to the bathroom with him and clean him myself, that's what happens. He forgets he needs to use paper. I tell him to let me know when he has to go but I'm not with him every minute. I might be in the kitchen or the bathroom myself (a different one). It's hard to keep track of him every minute. I manage to get a sitter less than once a week. I'm really almost to the end of my rope. He's had dementia since 1999 and I am his sole caregiver. I'm just worn out. What can I do to solve this particular problem? Has anyone had to deal with this sort of thing before?

Judy

February 16, 2012 5:33 a.m.

The biggest problem I have is, I am the youngest child, I have an older sister and another sister and a brother. Both my sisters live in NC and my brother lives here within a couple of miles of me. I would love to be able to take a mini-vaca and go somewhere, however my brother and his wife &quot;SMOKE LIKE CHIMINIES&quot; Literally. When I had a wedding or a funeral to go to I've left her over there for the least amount of time possible because I care about all the smoke she will breath while there. My brother is also unsure about caring for her, as long as she doesn't need HELP in the bathroom he's OK with her sitting on his couch for 4-5 hours. After this amount of time he wants me to come and get her. I have her in day care 4 days a week I get 4 hours aday to myself. Sometimes thats just not enough. I've been doing this for going on 3 years this April 15....I Feel guilty wanting a mini-vaca however &quot;I NEED ONE&quot; My sisters would never take her for a week or so and even if they did I would have to transport her back and forth to NC. It a 10 hour deive that ends up taking 12 or 14 hours because I have to Stop frequently for potty and to get her up to walk around otherwize she turns into a stone-person and cannot bend her joints get's really stiff.I guess what Im trying to say is I wish I had someone I knew and trusted well enough to watch her so I could get away. My husband ids the only one working so we live off his check and mom's SS money plus my Brother

Laura

January 23, 2012 6:53 a.m.

My 88 yr old Mom has had ALZ for probably 7 years. Since her last hospitalization from a bladder infection, she has not been the same at all. She is home...but her sleeping at night is barely existent. My father now sleeps on his couch because she insists on talking the entire night. I have a baby monitor on so I can hear her calling out for me and run to her aid. I probably go downstairs to her room about 25-30 times a night. I am exhausted.....I love that our relationship is so close and endearing but through the night I tend to become short and firm with her in a desperate plea to get sleep. Today she goes on a waiting list as a crisis patient for a nursing home. I can't go on and my Dad has claimed he's headed to a mental hospital if we don't stop trying to tend to her ourselves. There's 7 of us in the household and while my children and hubby support me, the night times are very lonely and her yelling keeps everyone awake. I have a sister and a brother.....I believe they sleep great knowing that their Mom is being looked after well by their sister and father. However.....I'm so disappointed in the lack of understanding and lack of help. If other family members outside the home took the time to help, maybe I would have some more life in me to continue keeping her home. Dad questions them in his talks with me....it hurts him.

Marian

January 11, 2012 11:34 p.m.

I am a 67 year old woman taking care of my 78 year old husband who is in the mid stages of Alzheimers. More and more of my life is taken up with catering to his needs. I am so angry. I am also fearful. I no longer love him. I feel nothing but contempt. A few weeks ago I thought I'd found a solution. If I stayed calm during his tirades and not let his actions provoke me, then he became calmer also. But that didn't last long. He was never an easy person to get along with, and now his worst traits have come to the foreground. He's suspicious, stingy, greedy, and ignorant. We're told not to take things too personally. It's the disease talking. But when you're subjected to it 24/7, it gets to the point where you just die a little each day. God forgive me, but I'm wishing he would die so we'd all have some peace.

Joy

December 14, 2011 2:13 p.m.

Home care is truly what should be accepted for an Alzheimer's patient but we do not live in a perfect world. Caregivers must work and earn money because government subsidies are not really consistently available
Loved ones are shunted to nursing homes, away from families and friends. Visitors are far and few between and the loved one becomes worse, either by him/herself or via administered drugs.
What could result from this conundrum is shown in the latest novel by Shawn Graves and Don Canaan--abandonment. Check our website, http://www.DutifulDaughter.com and read the first chapter below:
CHAPTER 1
“Well, aren’t you a pretty little thing?”
Laura froze. The sounds of the fair were drowned out by the roar in her ears. It was already warm and promised to be a hot day, but she was suddenly chilled…and a little girl again.
“Daddeee…..I’m scared!”
One of her earliest memories was sitting in one of the cars on the Ferris wheel as it rocked lazily back and forth. The wheel had stopped with their car at the very top and all of Fresno and the surrounding areas spread out from the fair grounds, the lights of thousands of homes and businesses twinkling in the night.
She clung to her father, squealing with equal amounts of horror and glee each time she peeked out over the edge of the car to look down on all of the people. It only took a few seconds before she buried her face against her father’s shirt, the fabric fisted in both small hands. His arm around her made her fe

Don

October 23, 2011 3:10 a.m.

It's a battle. I deal with feeling good in achieving something with Paul, my husband, and feeling anger about other things I cannot change. Today I read to him and he was really into the story. That made me very happy. Then I got home and thought he was going to bed. Right now he is the tub for a second bathtub and I can't make him to see it as wasteful and unnecessary.
Thank you for the article.

Marinalva

October 6, 2011 10:20 p.m.

I do not prtend to be an &quot;Alzheimer's&quot; expert. I have been a hospice volunteer for about 25 years and currently am seeing my first Alzheimer patient. By God's grace I am blessed with a lot of time and have the privilege of spending about 12 hours a week with my patient. He has early onset Alzheimers. He is in fairly good physical shape but must have 24 hour care.His wife works full time and hires a part time caregiver in the morning. Are there other resources that could give assistance to caregivers who are &quot;stressed to the max&quot;? It has been a blessing to me to be associated with this beautiful family and wish that more volunteers could spend time with these folks.

Mary

September 22, 2011 9:04 p.m.

Hi ! Bonnie, my husband likes to drink and cannot remember how many he has had. I buy Beck`s at Costco and he drinks that sometimes. He know`s I don`t like him to drink but he, likes to escape to the bar when I am not around. I have tried everything. He could go at lunch and at 5 pm tell me he didn`t go - as he doesn`t remember.
It is very frustrating.

Nancy

September 22, 2011 4:19 p.m.

I used to get angry at myself and my mother who is in stage 2 of dementia. She used to not understand her situation and denied she needed any help. I could handle that almost better than now.
She is more at peace with the situation, now that we have her medications identified and more evenly provided. She still does not understand why she has to be in a care facility, but she no longer is angry. She now stands on the other side of the door when I leave and asks why are you leaving me? I find it very difficult to look back at her and have to walk away. That empty feeling stays with me for many hours. The more I see her the more she expects to see me, and the harder the separation gets.
I know I can not take care of her, but it is still hard to believe I am doing the right thing. I just hope that she forgets it faster than I do.
It is a terrible disease and I know it will get worse.

Wayne

September 19, 2011 7:33 a.m.

Simon, since we still don't know the cause of Alzheimer's, there is no proven way to prevent it. All recent studies seem to indicate that whereas life style, nutrition, and other 'common sense' courses of prevention might be helpful, as of yet there is NO nutrition or life style change that has been conclusively shown to have ANY effect on preventing AD or slowing down its progression. Save your money on vitamins and supplements ... they do not work. Even the FDA approved meds for 'treating' AD do not prevent AD nor can they cure AD. For some, even these meds do not help at all, and for those who are helped by them, the positive effects of the meds usually last only for a year or two at most. If/when researchers can determine the actual cause of AD, then ... maybe ... more effective meds will come on the market

Allan

September 19, 2011 7:05 a.m.

Hi,
I've read a few of your blog entries and think they provide a great insight for Alzheimer's caregivers. I'd to hear more about the disease itself and possible preventative/maintenance measures for sufferers of Alzheimer's. Can diet/nutrition and lifestyle increase the likelihood of getting Alzheimer's in later life? Or is it strictly hereditary? I've bought various natural supplements such as Ginkgo Biloba for Alzheimer's prevention from sites like Syncro Health but what is Ginkgo Biloba and can it really be that effective in preventing such illnesses? Could you do an entry on these sort of topics? (i.e. nutrition, lifestyle choices that might impact Alzheimer's?) Apologies if you have already written something on this subject - I couldn't find anything.

Simon

September 16, 2011 6:45 p.m.

It's not easy to be angry... and there isn't always the support you talk about in your article. So what do you do - how do you find the right care, someone you can trust to care about your loved one like you do?

Kathy

September 15, 2011 1:08 p.m.

Family support is critical when caring for a parent etc. Please don't leave it up to just one member of your family to look after your mother or father, etc. It's not fair to your sibling. At least call them if distance and work prevents you from visiting often. We don't know exactly with all the research what a patient will or will not remember. Show up and be there to support or pitch in a few hours to give breaks where they are needed. After all is said and done, my friend's mother is now in 24 hour memory care. Her daughter is getting the rest she needs after 5 months of exhausting care for her Mom and for her step-father. Respite services are available at many Assisted Living centers and skilled nursing facilities. Blessings to all who have to care for a loved one. God is with you each step of the way.

T.

September 15, 2011 10:30 a.m.

I took care of my husband for 5 years before he died last Feb. His mind was ok, but he was physically dependent. My heart goes out to you folk who describe taking care of your loved one who has AZ. I identify with the feelings of helplessness, anger, and grief. Even though I did everything I could to help my husband get well, we were always adjusting to a new normal as his health continued to fail. I became exhausted and depressed. And angry. Not one person in his family nor mine offered to help. Church? Forget it, they weren't there either. (My belief now is in God but not &quot;the church&quot;). Months later, when I would run into someone from the church, and they would sympathetically inquire, &quot;How are you?&quot; I answered, with an edge to my voice, &quot;I'm fine, how are you?&quot; Why should I share any bit of my self with them when they could not even call to ask how I was doing during the time I suffered so much for my husband? Yes, I work this with a therapist, as well as my grief at what he went through for so long. Just typing this, I cry. Concerning some of the above situations where your loved one does not make good decisions: it's hard, but there comes a time when we have to assume the decision-making role. My husband used to smoke. When he could no longer get the cigarettes, I did not get them for him. Later, he was proudly telling people, &quot;I gave up smoking, just like that!&quot;

Ruth

September 15, 2011 12:51 a.m.

I am a wife of 47 yrs &amp; caregiver for a man who is paraplegic and is showing dementia symptoms. I find that I had dealt with problems in the past well, but lately am showing signs of stress that are very worrying. His brother and family live nearby, but there is no offer to assist or spell me and I wonder how others deal with this. I think they are afraid to be drawn in so keep their distance although say call if we need something. I have taken care of both my husband's parents one of whom was an Alzheimer's patient who was finally in a care facility, so my worry is that my husband might follow in his mother's footsteps and I can't see a care facility taking care of my husband and his special needs as a paraplegic. I just go on every day hoping that I can &quot;fix&quot; things as I have done for all the years of our marriage. This man was always very independent and was able to do most things for himself, but at 77 needs more assistance. There are times I hate it when he calls verbally or by phone as I'm doing other things or just hiding for some time alone and react so angrily that it scares me. I'll read all the comments from others with similar issues and shall get the publication for myself and a friend caring for her Alzheimer's husband. Thanks for dealing with this terrible issue.

Leslie

September 14, 2011 8:24 p.m.

Decided to check my email because I'm just so exhausted and needed to sit down by myself for a few minutes and there was the newsletter and blog. It really does help to know that I am not alone dealing with this. Reading your posts has helped immensely. I'm dealing with two - mom and husband - well he's an ex now because of this disease. I was busy looking after Mom and didn't realize it was happening to him as well because he is early onset. He became extremely paranoid and agitated and violent, and he ran off. Now in addition to Mom, I'm dealing with an ill man divorcing me, who has no idea what is going on. It's destroying our kids, he's getting worse day by day, and I'm exhausted.

Diane

September 14, 2011 4:14 p.m.

Helpful comments! How about the blame game? A step daughter, Linda, was quoted as saying I &quot;had driven Daddy to psychosis&quot;? Cruel, mean, ignorant from her own fear of inheriting the disease/the probability of the disease. But still--how do you deal withthat?

Joan

September 13, 2011 1:53 p.m.

Dear Bonnie,
It is so difficult for our loved ones to give up the independence they have known and enjoyed all their lives. It was difficult for my mom to give up driving and no longer carrying a purse (she would leave it all over the place.) Keeping large amounts of cash may be an independence issue.
This may be a bit sneaky but as far as the drinking, once the bottles are purchased, can you water down the alcohol? Would she notice the difference?
Cash? My mother was hoarding money and then couldn't remember where she hid it. We would find it in the most ridiculous places. She lost over $1,000 and it was never found. If she doesn't keep the purse with her at all times, perhaps removing most of the money and putting it in her bank would be better. Just keep some there so it's not so obvious some is missing. I dislike that this sounds devious but sometimes you have to be creative to protect your loved one.
Most importantly, is there a support group in your community? If so, I highly encourage you attend some of their meetings. For many, you can take your Mom with you. This will be a huge help for you and they may be able to offer some suggestions when you have a new dilemma in your life.
Believe it or not, later on she will allow you to take care of her and there will no longer be any fight left in her. She will simply enjoy the love and attention you are giving her.
Blessings,
Nellie (actually Nel)

nellie

September 12, 2011 5:20 p.m.

Thanks Nellie. It's good to know that the hunger issue isn't one. I'll just keep feeding her and hope she eats.
So I should try to control her alcohol consumption? She is the one who wants to stop at the liquor store. I need to find a way around this without offending her. Ugh!!!
I do pay the bills out of the bank account but she carries large amounts of cash making her a target for theft. A sales clerk at Walgreens warned her that it was dangerous. I thought that would be enough but no.
Caring for the elderly is hard, convincing them to let us is harder.
Thank you for your input.

Bonnie

September 12, 2011 11:23 a.m.

Dear Bonnie,
What you are feeling is quite normal, it seems as we all have experienced some of this ourselves. First of all concerning hunger, brain receptors are no longer working as they should. They usually have to be reminded to eat or reminded that they already ate. My mother went through both of these. Now she doesn't remember that she has eaten. A good way to work through this is offer small meals throughout the day rather than 3 big ones.As far as the money situation, you might want to approach her knowing how busy she has been. You would be more than happy to pay the bills for her. One step at a time. Carrying on a conversation is difficult but she needs the stimulation. You might simply discuss things that may not be that difficult.
As far as drinking, I am assuming you are discussing alcohol since you weren't specific. If the bottles were removed from the house, would it help?
Family...if they have computers, post a weekly email with updates on your Mom being completely frank about the situation. Who knows? That may cause at least one to call or write. Last suggestion....try to find a support group nearby. You could really use someone to talk to.
Hope some of this helps.

nellie

September 12, 2011 9:44 a.m.

My mother has Alzheimers and is in a nursing home. At this point she has lost much of her gross motor skills and sometimes has difficulty feeding herself. Her memory will last a few minutes at best. My father passed away almost a year ago this September. He and my mom were VERY close. The day after the funeral, we told my mother the news and of course she was broken hearted. By the evening she had already forgotten. My family visits her daily and on occasion she mentions how she misses my father and questions why he hasn't come to visit her. On the other hand, on other days, she'll metion that I just missed him or that Dad had made such a good dinner for her. On the days that she is sad because she hasn't seen day, my brother wants to remind her that Dad has passed away. I disagree as I worry that she will be broken hearted all over again. Any feedback on this would be greatly appreciated.

nellie

September 11, 2011 10:13 p.m.

WOW! Look at all of us. We so desperately need someone to talk to we talk to strangers.And I, for one, am grateful for you all. I have only my daughter to talk to. My sister and uncles seem to have stopped calling. They were only calling to talk to Mom anyhow. None of them will talk to me. Since they are no where around when I need them I am glad I have you all.
I have a couple questions you may be able to answer.
1. Mom likes to drink. She can drink a LOT. She is an adult (sort of), and I am not a control freak, so. . . do I just let her drink? I don't want to deprive her of what she wants (although it does seem to depress her).
2. Talking to her is difficult. She can't hear me, understand the idea I attempt to convey and she can't remember what we talked about. So, as a result, we don't talk much beyond the necessities. I feel guilty.
3. She spends money on too many clothes and general junk (for lack of a better word). Money is tight. She controls the purse strings when the check comes in, but she don't pay bills or transfer it to her wallet (bank envelope). It don't looks safe. How do I change this situation with tact?
3. She don't recognize hunger any more. How can she not identify that she gets hungry and needs to eat?
Any help or input is appreciated.
Thanks to all my new friends!

Bonnie

September 11, 2011 8:02 p.m.

Another question to ask: How can I put this anger to productive use?

Doug

September 11, 2011 12:35 p.m.

This is my first time writing. I am angry but not as much with my husband as my self. We have been married over 50 years before this disease appeared so we could identify it. I had thought my husband was suffering with something but he would get so angry when I ask him to see a doctor, I would back off. He had always been a very healthy strong man and I was the one that had battled cancer, plus other illness. He always said never worry, I will take care of you. Let me do what I know is right now and later you can do what you want. I was such a fool and went along with his ideas. Now I have to take care of him and he still will not admit he is ill. He still want to control. I am angry because I believed him when he told me all the things we would do. I let him have his way, doing all the things he wanted to do, thinking my time would come. But now, I am here taking care of him, yet he think he is in control and taking care o f me. I can not have over 20 minutes of private time, with out him coming around to see what I am doing. He still thinks he can drive and don't trust me to drive. I do the driving and he has to ride with me because I will not ride with him but he sit there in the car, looking so very angry. To go out with out him, is not often, he can stay alone but when I get back, he is so angry as if I had stayed too long.
I just wish, I had not listen to him and did some of the things I wanted to do when I could have, then now this would not be so hard.

Mary

September 10, 2011 6:38 p.m.

Anger, I have got lot of anger, you know what? that is what keeps me going, I symphise with anyone who is a care giver, anger is a natural thing, I get angry with my wife when she hums all the time, no madder if I'm grocery shopping or trying to buy her some needed garment she is humming, the Questions, hundred times the same question, but you know something, I really miss all of that, she took a 4 day trip to a granddaughter's wedding with her kids and I can'r hardly wait until she gets back, I miss all those questions and the humming, siblings should help more and give you more time to miss your love one, I've found that you have to have time to be alone and miss your love one.
travis...

Travis

September 10, 2011 7:39 a.m.

Gary you are absolutely correct. tiredness comes to caregivers of this disease, exhaustion to caregivers to this disease......my ANGER goes to system, government to law makers who say &quot;to bad on you and your disease....I have great medical coverage and the power to help you but to bad I won't&quot; If we had help, via Medical treatment, research, tax deductions for caregiver aids ......help of some kind. But because this is a &quot;Senior Disease&quot; !!!! Shame on every lawmaker that claims to care at election time and then worries more about Politics and keeping there jobs and great medical coverage. A caregivers love knows no bounds but the tiredness wears them down, I can't be anger at someone who can't change or help themself......I can only accept that my path is my path, and figure out how to survive and give my husband the love and dignity he deserves......all the way to the poor house....... but the blessing is he'll never know because that would kill him.

Terry

September 9, 2011 2:15 p.m.

Irma - I wonder how many more share your opinion regarding the inequity of the government forcing middle income, frugal savers,into poverty when it comes to nursing care regardless of the disease. For so long I've said the difference between poverty and middles class is on where you choose to live. Indeed, on the way to loosing all your savings and perhaps children's inheritance, you take comfort in knowing you not only paid for your nursing care, but quite possible the one in the bed beside yours if they are on medicaid. Yep your taxes paid for them.
If you haven't already done it, seek out an elder law attorney - a trusted one - that will help shelter your savings.

Gary

September 9, 2011 11:06 a.m.

To Marlys-- I too have a similar problem as my husband wants only me. He was diagnosed 4 years ago. If he doesn't see me for a few minutes he thinks I have left him. He becomes anxious, irritated, angry, sad all at one time. We only have a one bedroom apt which is essentially two rooms. We are together 24/7 for the last 2 1/2 years (I retired to take care of him as he was becoming depressed with me working and not being at home with him). I have to take him everywhere with me. Our children come over with their families but he wants me here. His hallucinations, delusions and paranoia are somewhat less now with medication. With all of this, he still tells me how much he loves me and wants me to be safe. I know he's not responsible for his disease; I do feel guilty, angry and frustrated at times...and I pray A LOT! ... for all of US in the same situations.

Donna

September 9, 2011 10:02 a.m.

Marsha - thank you for your comment. And to everyone else, pray for strenght, renewal and courage. I do that multiple times a day. The renewal comes when my mom smiles at me and says &quot;you are my child. Thank God for you. Am I going to stay with you?&quot; The smile gets me to the next day. One day at a time. I am going to ask my family to spend the weekend with me to help and to see what needs to be done. Maybe, just maybe, they will say, &quot;I'll be back in a couple of weeks or so.....

Lynn

September 9, 2011 9:32 a.m.

My husband Bob was participating in a trial to remove amyloid plaques from the brain. He was apparently receiving the medication because he was doing well. After 6 months he was eliminated because of micro bleeding of the brain. His condition has deteriorated rapidly. My fustration is based on the fact that I could not place him in a skilled nursing facility within the Humana Network because there is nothing available!
Although he is a medically healthy man his mental decline has accelerated. Our family has chosen a nurisng facility that can care for him but the cost is not shared by Humana or Medicare . He cannot sleep and wanders around at night disoriented and anxious.
It is ironoc and criminal that if he was a drug addict or an HIV patient his nursing care would be provided by Medicare/Humana or Medicaid for which we are not eligible.
My husband has been an ethical, hard-working family man, who provided for us unselfishly. I will do my best to see that he is treated with respect and dignity throughout his life.
I am angry at the system that promotes government dependency for the indigent but ignores those of us who were responsible enough to save for a rainy day and are faced with a deluge. In today's America the government drives the middle class into poverty , the rich take care of themselves and the poor become wards of an increasingly socialist government.

Irma

September 8, 2011 10:19 p.m.

Wow! Lots of anger here! This emotion can be helpful if it initiates positive action; otherwise it can destroy someone. I cared for my husband of 54 yrs for 15 years and took him everywhere w/ me until his last 2 yrs. He wore his "Safe Return" bracelet during the wandering stage and we always got him back if he got away from us! Adult daycare was a Godsend for 6 yrs, which allowed me to continue working full time. The cost was worth it and less than a nursing home. Hospice came into the picture for his last 14 months and they were wonderful. Family lived in other states except for my son who had been downsized in his work and helped w/ care for the last 5 yrs. Church friends brought meals at times. We patched it together and were aable to care for him at hometo the end. I paid neighbors to stay w/ him when my son became ill and could not help and I needed to shop for groceries. We did the best we could, I miss him every day but would not change things. I look upon our time together as a gift. I believe it helps when one doesn't expect too much from others----some people are not able to do this but I was blessed to be given the courage and strength to do so---friends prayed for that courage and strength and I am grateful for their prayer support. People can pray when they can do nothing else. "This too, shall pass."

Charlene

September 8, 2011 9:47 p.m.

I wished you could write to people on this page directly. I can't believe most of the people on here write about not having any help. It is the same for my husband and me taking care of his mother. It will be three years dec. 27, 2011. The bro that goes south for the winter has been here a total of 4 times this summer. &quot;Family&quot; makes me sick. It was the same when i took care of my mother, they only showed up when she was in the last days of her life.

Georgia

September 8, 2011 9:29 p.m.

I am angrier than I ever remember being. I care for my husband of 49 years who was diagnosed with ALZ around 8 years ago. The problem is my Mother who came to live with us almost a year ago. The 3 sibs do nothing. She told me today &quot;I hope your kids don't treat you as bad as you treat me&quot;. I prepare her meals, pay her bills, set up her pills, take her to her doctor appointments &amp; it is NEVER enough. My precious husband is so good, but cannot be alone. My daughter does most of my shopping as I cannot get out. She is my right arm. I wanted my sister to take her back for a month or so when she comes to visit (first time in 3 years), but she told me that is not an option. My faith is my strength.

barbara

September 8, 2011 8:12 p.m.

It's good to read about other people and how they are coping. My family is willing to help, but my husband wants to be with me all the time. He gets angry and tells people to go home if I leave him with someone. I go shopping and he is with me, sits in the car, which is a problem with the really hot or cold weather. Sometimes I have forgotten the keys in the car, he moves the car and then I have trouble finding him or once he parked the car right on the sidewalk where you walk in the store. How do you get a break when he won't let me out of his sight?

Marlys

September 8, 2011 8:08 p.m.

I had a problem with myself ever since my aunt passed of alzheimer's 7 months ago. I was her caregiver and only family member who'd visit her the most. Her brothers and sisters didn't take time like I did. When she passed, I felt like I made her go. She had alzheimer's. My life when she passed was devastating. I felt sucidal when she passed and feel like part of my life went with her when she passed. I am trying to get myself back together and it's too hard. I am upset with that sorry nursing home she was put in cause they monitored her taking her medication, wasking up, eating, wandering, having her heat on high, taking knives out of the dining room and eating soap and other things she could have eaten while not being watched. I feel like this world isn't taking the disease seriously the way they should be. My life feels worthless and useless since she passed and it's real hard for me getting back on my feet since she passed 7 monbths ago.

Sharmel

September 8, 2011 6:49 p.m.

these posts are so sad. it does help to know that others are as angry as i am. all the support groups say to do all the cheerful wonderful things and everything will be great. not so. what are most of you giving the patient to help with anger? today i turned on the water sprinkler. my husband had been sitting on the porch. he walked under the water. he then attacked me with the shovel i was using to plant something because he got wet. i am very careful not to make him angry. i must soon make a decision about placement in assisted care. if i had a tazer i could protect myself until then.

Judy

September 8, 2011 6:14 p.m.

As I was reading the comments before me my husband fell from his wheel chair and I had to call the fire dept. to come pick him up. He cannot stand nor walk. He weighs 180 lbs. Like a block of concrete but expects me to pick him up like he weighs 5 lbs. The home health nurse was here this afernoon. He told her I don't have to do anything for him. He can get from the bed to his chair and back again with no problems. How she asked, and he answered, well, Fay just comes over and helps me stand and then helps me into the bed. He does not get it. I have pulled my right shoulder out of socket and now it is killing me all the time. I have a walking boot on my left foot because my tendon has been pulled from the bone of my left ankle. I have had low back surgery, neck surgery, right hand and left hand surgery. I stay angry lately because I am completely worn out. His grown children live very near but do not come nor call. I have no help and am at a lost because he told the doc if we put him in a nursing home he will commit suicide. What do I do? He is 88 and I am 62. It was OK when we married 25 yrs ago but now it is killing me. Any suggestions? I love him and want to take care of him but at the cost of my health? I think he will outlast me. I would like to go to sleep tonight and not wake up tomorrow. I think then my pain, my anger, my guilt would all be gone. But who would take care of my love? I can't leave him behind. I love him too much?

Fay

September 8, 2011 5:06 p.m.

My husband has been have TIA which are mini strokes. In late July he had one and has not been the same since. He is 67 years old and I find it so hard to see him fail each and every day. We have been married 44 years. No one understands the how hard it is to see your loved one suffering. Of our five children, I only really have one to depend on.....

Nancy

September 8, 2011 2:43 p.m.

I FEEL THAT MANY PRIMARY MD'S HAVE A PROBLEM IN UNDERSTANDING THE PROBLEMS OF CARETAKING, OR THEY JUST DONT CARE OR HAVE NO TIME.

David

September 8, 2011 2:42 p.m.

Mother has lived with me now for 5.5 years. She has alzheimer's, a colostomy, and wears a diaper for incontinence. Frankly, I'm GLAD she has a colostomy as it saves me from having to change a poopy diaper. The problem is, she has no fat on her butt as it was removed to build up the colostomy area BACK IN 1985! She was given a 7 year life expectancy THEN. She has terrible sores on her bottom that I was always able to get healed until this last bunch. They are persistent, now. She suffers terribly from the pain. She used to suffer from shingles pain but that has gone away and prayerfully will not return.
I have no family close by. They rarely communicate. My husband and I never planned on my not being able to work full time. We never planned on having to take care of mother, either as my sister was supposed to assume this role (long story; suffice to say she benefitted outrageously from my mother, previously).
We used to have so many friends. Nearly all were through our CHURCH. It's been very painful that I do not hear from ANYONE, anymore. It's tried my faith.
I just wish GOD would take mom in her sleep. So does she. She wants to go and be with dad, her husband... who died suddenly and unexpectedly 15 years ago. That was also the onset of her dementia.
I can't find a quality nursing home that will even take mother due to her having the colostomy and alzheimer's in Flor. Yet, Texas was going to take her over, against her will, 6 years ago. 1500 characters

Too tired

September 8, 2011 2:27 p.m.

My Mother is in middle stages of dimentia. She takes 2 namenda &amp; 1 aricept daily. She is sleeping sometimes til noon or later. She is in bed by 10p.m.. Should we wake her in the morning, or let her sleep? Thank you.

Diane

September 8, 2011 1:52 p.m.

I'm so glad to hear that angry is normal for a fulltime caregiver. My husband was diagnosed at 53 and is now at 67 in the later stages of AD. I am the only caregiver with the exception of one brother who does something with him once or twice a week. He is now not knowing what a potty is for and having many bathroom accidents. This is so hard for me to do (cleaning up) gracefully. I get so angry at our situation and am sometimes so bitter when I see so many of our friends doing the things that we thought we would be doing at our age. It's so hard to do everything by myself. My husband cannot do anything to help around the house. It is hard enough to do all the housekeeping jobs but what is even harder are the things that a man would normally take care of. Nursing homes are not the solution because he has a nice retirement check and it would pay for the home but there would be nothing left for me to live on. Sometimes I wonder how long I can continue to live like this.

Sue

September 8, 2011 1:29 p.m.

I find I still get angry when I visit my husband in a &quot;memory care unit&quot; and all he talks about is coming home and why I won't bring him &quot;home.&quot; He has been there two years after my caretaking for eight, and yet I feel frustrated and angry when he tells me he can take care of himself and doesn't need help.
I spend one afternoon a week with him and barely make it through the day answering the same questions and focusing on spending time together. Does the anger and guilt ever go away??

Ann

September 8, 2011 12:28 p.m.

I feel so helpless at times trying to navigate the maze in search of good care and support. I too was fortunate to find an “eldercare center” that my husband attends several days a week. They also have an excellent arrangement with a nursing care facility for respite care. Yes there is cost but it allows a spreading out of the cost as the dementia diagnosis can be many years. This allows him to be at home and allows me to travel a week at a time every other month. I wish that there could be an integration of meaningful support services with the medical care .i.e.Hospice that will provide expertise on specific patient and caregiver needs in the early to middle stage of the dementia rather than the late stage, when it is too late.

Ruth

September 8, 2011 12:25 p.m.

Forgive my typo's etc. the room is dark while I sit by my sleeping wife. Her course of life is almost run and soon she will cross that finish line. Lack of care from siblings or family members seems common. As a follow up to an earlier post - lip service without action to help is worthless. Some may justufy the lack of visits let alone helping feed, dress, bath as their way to deny what is occurring to their mom or dad. Experiencing some of this I called my son and asked him what he thought about my plan for his mother's funeral. I said quite seriously, that when death occurred hospice would be notified, pronounce her dead, call the funeral home to pick his mom up for an immediate burial closed casket. I mentioned how much money that would save over a traditional open casket funeral, and the children could remember her as she was when they last saw her, which has been some time ago. Son, just think, you may never have to touch her hand kiss her cheek and tell her you love her again. She loved you, goodby son, good by.

Gary

September 8, 2011 12:12 p.m.

I feel so alone in careing for my husband.
When I do have a chance to go out, he is still on my mind.
He goes grocery shopping, because his taste has changed. People who know him bring him home. I cannot stop him,he gets angry. He won't take ID, says he doesn't need it.
That's my life.

Angela C

September 8, 2011 12:05 p.m.

Good article on anger. Frustration spawns anger - caregivers can and most do share a deep bond of love with the AZ patient. Gradually you witness changes which are ever drawing your loved one deeper into the mire of life;s reversal - they will be like a child and then a baby and then,,,no longer among the living on earth. As a caregiver witnessing these gradusal reversals you struggle to have your loved one hold on and not give up, but to no avail. The ability to do islost. I prefer to think the ability is never los but like a lamp unplugged, the bulb won;t ;ihjt and so it is with the brain. UNPLUGGED - not forgotten or lost - yet you can notchange reality as a caregiver. Try as you may yield to the circimstance - frustration only leads to anger. When - and it will happen - you do get angry, calm down, hug or at least touch the patient and tell the you are sorry ask for forgiveness and even shed some tears. Never forget that could be you receiving care - one day.
For those who have family that neglect your need for respite or support, that is more common than you;d think - you are not alone. It is wrong and resented rightfully so. As the AZ progresses you will need four handsat least to help your loved who can barely stand. When swallowing and aeven opening the mouth seem almost impossible - and it take 45 to 60min to feed a half bowl of cereal, you deserve a break especially from family members. I'm dealing with that as I write.

Gary

September 8, 2011 11:56 a.m.

As I care for my husband who is now into the moderate stages of Alzheimers, I have wonderful family support as well as help and support from dear friends. They are, however, very busy. I have found a wonderful Adult Day Care program in my city. He loves going there where he is with other folk who function about like he does, he is stimulated with the many activities available, and cared for by loving, happy people. There is major cost involved, but I have found it to be worth it. Having him there is a real blessing to me and to him. If cost is an issue, there are programs in the community to help pay for at least a few days each week, so I would suggest that any caregiver look into such a program in their city.

Betty

September 8, 2011 11:40 a.m.

Lynn...No you are not wrong with your feelings about family members who claim &quot;they care&quot;. I have that feeling sometimes too. And sometimes I think they care but they still don't know what it's like living with &quot;it&quot; all the time. And to your question...&quot;Why should I have to call them to help me when they know I can use the help?&quot; I have been asking myself that same thing! But you may never get the help you need if you do not ask. You are NOT alone in this caregiving experience...I feel your pain!

Marsha

September 8, 2011 11:25 a.m.

I feel like I should clarify that it's not that I don't get any help...it is just few and far between.
Bonnie...I too have an older daughter that helps some and I am so thankful for that. That's how I get my one night out a week! And what you said about it being &quot;an honor&quot; to take care of them is so true...that's why I feel guilty when I complain about feeling angry. But I don't think we are being selfish wanting to have a life for ourself...we just want/need more help. I feel like if we aren't able to get tbe breaks we need and deserve we are going to need someone to take care of us as well!

Marsha

September 8, 2011 11:19 a.m.

I sometimes feel alone in this caregiving experience. I realize that I get angry because I don't have &quot;real&quot; help. I odn't have someone to spend the night, wash, dress and cook for my mom. I don't have anyone that i can depend on while i just lay in the bed, go whereever and not worry about my mom for a day at least. That is &quot;real&quot; help. Am I wrong for feeling that family members who claim &quot;they care&quot; really don't care because they have not offered their assistance or even call much just to check in? Why should I have to call them to help me when they know I can use the help? I feel that they don't want to do it and I don't want to give them the satisfaction of me having to ask them. Just angry with family members.

Lynn

September 8, 2011 10:49 a.m.

I sure live with the guilt that comes with the job of caring for my mother. I am amazed at how other family gets to use their lives as an excuse not to help. Why is one person expected to do it all? I am lucky. My 22 year old daughter helps me. I feel guilty about that too. She is young and bogged down in her youth helping with her grandmother. It isn't fair yet I can't get my sister to help. She won't even talk to me anymore. Maybe she feels guilt too. Guilt she isn't here helping. She complains about her life but it is a life she protects and refuses to change.
All in all, I know in my heart it is an honor to take care of someone at the end of their life. Perhaps I am selfish to dream of time for me; a life of my own choosing. One day. . .

Bonnie

September 8, 2011 10:11 a.m.

What time of day did you give them the folic acid? My step mother is just entering into the sundowners symptoms.

Bonita

September 8, 2011 9:52 a.m.

Most of my anger comes from the lack of help from family. I understand they all have jobs and lives and two of them live out of town but is only a two hour drive. They also all have spouses and I do not which is good in some ways I guess...but therefore I don't have that &quot;someone&quot; there with me to help with decisions or just listen when I need someone to talk to. I had just started seeing someone right before my Mom moved in with me, but with one night out a week it is really hard to have a relationship. My last child had just gone to college so I felt free for the first time...FINALLY time for me! Mom is still in the early stages and if I'm allready feeling this stressed and angry what's it going to be like down the road???

Marsha

September 8, 2011 9:16 a.m.

My anger comes by being overly tired as I am today from working in the yard for 2 day, 2nd day I was working for 3 hours and should have quit but wanted to finish that flower bed so I only now have the front ones to deal with. Also I think some of the anger I feel is because I still have a hard time when he doesn't understand. He is now wearing diapers to be at night and he helps me by holding the back while I bring the front up and fasten the tapes. Yes, I thank God each time that he doesn't fight me one this. Last Dec. I was able to be gone for 3 days but not now as I can't afford to hire some one to care for him as my sons both work and does the one wife and the other home school and is very busy in her church. He still likes to go to church, in fact he likes to go period. The manager of the grocery store where we trade makes sure he has 2 Chocolate Chip cookies each week.

Dorothy

September 7, 2011 8:39 a.m.

Hello,
I had great success using folic acid to relieve symptoms of sundowning in my mother. Can I submit my documented experience to you?
4 OTC folic acid tablets a day eliminated all symptoms for a year, then when it slowly started again, a 50% increase in dosage again eliminated all symptoms, for a total of 1 1/2 symptom-free years before she entered a nursing home for her last year.

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